Patient Peggy C. of Mississippi is living with a rare condition. Instead of access to the right treatment, her insurance company forced her to obtain prior authorization, which caused her condition to worsen.

Before patient Peggy C. of Mississippi could get access to the right treatment for her hypoparathyroidism, she had to overcome a hurdle from her insurance company.

“I was told I need prior authorization,” she remembers of the experience.

Living with a rare condition is hard enough — without the hassle of insurance barriers. But for many patients like Peggy, the patient journey is made more challenging by prior authorization requirements that delay access to the right treatment.

40 Year Wait for Treatment Innovation

Forty years ago, Peggy had her thyroid removed. During surgery, her vagus nerve was damaged, leaving her with a hoarse voice and partial stomach paralysis. The surgery also damaged her parathyroid glands causing hypoparathyroidism.

For decades, patients living with hypoparathyroidism have lacked treatments. Instead, they’ve been told to take calcium pills and vitamin D. Taking pills, which most can take for granted, was a problem for Peggy because of her gastroparesis, which prevented her from absorbing the calcium. Without sufficient calcium, the body can experience seizures, which requires hospitalizations to infuse calcium directly into the veins.

Peggy’s doctor prescribed extra calcium to make up for her poor absorption. That excess calcium intake, coupled with the complications of hypopara, caused chronic constipation and ultimately led to a condition called nephrocalcinosis. Over time, she was moving closer and closer to kidney failure.

Peggy received new hope in 2015, when the Food and Drug Administration approved a new treatment for hypoparathyroidism that reduces the need for calcium. Peggy, like many hypopara patients, was excited to start the new treatment that promised to greatly improve her quality of life.

Insurance Delays Access to New Treatment

She’d waited decades for a new treatment innovation, but Peggy’s insurance company, Wellcare, wasn’t in a rush to provide her access. The first delay: the new treatment wasn’t on the insurance formulary. That meant additional paperwork from her doctor to prove the medical necessity.

She gained access, temporarily. Her kidney health began to improve and daily life was getting better. But it didn’t stay that way.

Out of nowhere, a new insurance card came in the mail with a new patient identification number. She didn’t think much of it. “Nobody explained to me that I’d be getting a new card with a new patient number in the mail.”

A few weeks later, Peggy was still progressing well, and it was time to pick up her next supply of medication. She went to her CVS Caremark pharmacy, but they wouldn’t provide the prescription.

“I was told I need prior authorization,” she said.

Prior Authorization: Explained

Increasingly, the medical decisions made by a patient with their doctor are being overruled by insurance companies. Even if a doctor prescribes what he or she believes is the best treatment, insurance companies can require what’s know as prior authorization.

Under prior authorization, an insurance company gets the power to veto a prescribed treatment. Patients are forced to get permission from the insurance company before insurance will cover the cost. Frequently, the insurance company will deny a patient’s claim. Even patients that ultimately gain approval can suffer painful side effects during the delay.

Insurance prior authorization requirements also make it inconvenient for a doctor’s office to provide the proof. In some cases, they require a prescribing physician to speak on the phone with the insurer’s medical liaison. That additional hurdle can discourage doctors and patients, who’ve already spent hours completing paperwork.

New Insurance Number Causes Insurance Nightmare

Peggy’s doctor had already taken the time to make the medical necessity argument, and she had already received Wellcare’s prior authorization when the drug was first prescribed. There was no reason why she would need new authorization.

Nothing had changed. Her doctor had not changed. Her diagnosis was the same. The only thing that had changed was her insurance ID number. Coincidence?

“The pharmacist at CVS Caremark only knew he couldn’t proceed without the authorization,” Peggy recalls. “I would run out of medicine soon and I really didn’t think I would get the authorization in time to get me a new supply.”

She even asked the pharmacy if they could provide an emergency supply considering she was about to run out while waiting on red tape, but they refused.

“I knew I would probably end up in the hospital without it.”

2 Hospitalizations from Calcium Crash

Any hypopara patient will tell you that what happened next is no surprise. Peggy ended up in the hospital with a “calcium crash,” when the amount of calcium in the blood drops so quickly that it causes numbness, tingling, tremors, muscle cramping, and brain fog. If left untreated, it can lead to heart problems and seizures.

Patient Peggy of Mississippi, who is living with a rare condition, battled her insurance company’s prior authorization requirement.

The hospital’s treating physician didn’t have knowledge of her unique circumstances. That’s not a surprise because hypopara only affects about 75,000 Americans. Instead of treating her symptoms, the hospital treated her blood test by giving her just enough calcium by intravenous to get her numbers into the normal range.

She fought for more but the hospital wouldn’t budge. They discharged her. Less than 24 hours later, she was back in hospital with another calcium crash as bad as the first. Peggy couldn’t take enough calcium by mouth to avoid it because her gastroparesis inhibits her ability to absorb the nutrients from swallowed food and pills.

This time, the doctor gave her more intravenous calcium and again, discharged her, but not before calling her insurance and getting an emergency supply of her medication.

Peggy went back to her CVS Caremark, but Wellcare did it again, they insisted on prior authorization. She started making phone calls to her endocrinologist who contacted her insurance again.

Finally, after two hospitalization and severe complications, Wellcare removed the need for prior authorization.

Freelance writer Jim Sliney, Jr. is a Registered Medical Assistant. He writes educational and advocacy articles for patients with rare and under-served diseases. Connect with Jim on LinkedIn or follow him on Twitter.